Translating the world of living with a terminal illness to the world of the healthy is fraught with pitfalls and odd experiences. Language and details that I’m so used to now feels like a foreign language to healthy people. Yet, despite all of the talking and blogging and sharing articles about how to talk to someone who is dying, I still have inexplicable conversations.
A few months ago, I wished someone a happy birthday or something on LinkedIn. This is a person who I knew generally, professionally, but not well personally.
Her response was …. “I hope you are well.”
I sat and looked at her message for a bit. I think I talk about living with a terminal diagnosis an awful lot. So much so that sometimes I do try to dial it back, to not constantly remind people that I’m dying. And then I realized, I haven’t gotten through to everyone.
So, I responded … “well? I’m dying of Stage IV metastatic breast cancer and I will never be well. Think about that in October and think before you pink.”
I was actually rather proud of myself because the first response I drafted in my head was not nice, full of profanity, and had lot of questions that were probably not fair to ask this person. I didn’t send that one. I tried to think hard about who this person is and how little she knows.
Her response? “I’m very sorry to hear that your health hasn’t gotten better.”
Wtf. Literally, wtf.
I just said that I’m terminal, that I’m dying and this is the response? I’m desperately raising money and pressuring people around me to give to the right places and dealing with a whole lot of pain and medication and doctors and she’s surprised that my health hasn’t gotten better?
Sometimes, when something like this happens, I wonder if I’m making any kind of difference with my advocacy. I meet people every day and talk about metastatic breast cancer, I’m used to working hard to educate people. But sometimes it feels like all I’m doing is talking to myself or the people who already know.
Clearly, I’m not as effective as I’d like to be.
So, dear readers, help me. Give me ideas. Tell me what else I could be doing.
I don’t want to just speak to the converted. What should I be doing differently??